This sums it up...

One of the other parents on a neuroblastoma message board that I am on wrote this some time ago. It pretty much sums up how we feel on regular basis and what it's like to live with the fear of Elijah relapsing.

Britt and I both agree that this is brilliant.

There's a monster. It lives in our house.

It moved in a long time ago. It must have been hiding in the walls
because we didn't notice him for the longest time. But it was there.
It's the funniest thing because I never really believed in monsters. I
thought they were the stuff of fairy tales. Imaginary beasts that people
made up to explain their fears. They weren't real though. Were they?

But now I know they are real. The thing about monsters is they're not
just big and scary and with sharp teeth. Bears are big and scary with
sharp teeth, but they're not monsters. The difference is that the
monster has a malevolent streak. It's not there because it wants to eat
your garbage; it's there because it means to do you harm.
Disney got it all wrong in Monsters Inc. Don't believe it. That's all
imaginary. Those kinds of cute cuddly monsters don't exist. Steven King
has it right.

The monster sometimes comes into our room at night and slithers
underneath the bed. Its hot breath comes right through the mattress. It
leaves me sweating, scared, unable to sleep. And then a chill settle's
in like the window was left open on a January night.

We've tried to kill it a dozen times. Sometimes it seems like we're
winning, but still it won't die. And even if we kill it, I have this
terrible feeling it will come back from the dead like just like in the
sequel to a bad horror movie.

It's a clever beast and follows us wherever we go. There's no escape. We
can never see it because it hides in the shadows, but it's always there
and has ways of making its presence known. We can't live a normal life.

When we got the dog, we thought maybe he would scare the monster away.
The dog is smart and brave, but somehow he doesn't see the monster. The
monster, though, is keeping its distance. But somehow I think it might
be smarter than the dog and just waiting for its moment.

Try to explain a monster to your friends. They can hear what we're
saying, but they don't quite believe us. We still have all of our body
parts, and none of us has quite gone insane. They've never seen the
monster even though they've been to the house. Still they get the sense
that something isn't quite right. Some of them keep their distance. Now
we just smile and say, "Oh the monster...he's gone back inside the wall.
We're doing fine."

Sometimes our monster doesn't seem so scary. On a sunny day, when the
kids run in the park laughing and playing, we forget that it's back
there waiting for us. You have to forget for a while, or it will get
inside your mind and drive you over the edge.

There are professionals who know how to deal with monsters. Ordinary
folks never meet them other than on a social basis. We feel better when
we're with the professionals. They seem to know what they're doing. But
at night when we are home alone, there is just us... and the monster.
The chill returns.

There's a monster. It lives in our house. It lives in our boy.